Neurological Conditions in Scotland: What would make a difference?

In November 2016, NPC chaired a roundtable discussion on our recent report Neurological conditions in Scotland: A guide for funders, commissioned by RS Macdonald Charitable Trust. The roundtable brought together charities and funders who had contributed to the research and other experts in the field. Discussions revolved around the report’s key findings: the current trends, priority needs, solutions and interventions, and recommendations for the sector’s response. Much of the ensuing debate revolved around two key areas: information provision for people with neurological conditions, and the potential for organisations to collaborate to provide generic services.

Everyone agreed that information at the point of diagnosis is crucial for people with neurological conditions and their carers. One roundtable attendee spoke of instances where a GP has handed a post-it note reading ‘Cerebral Palsy’ to the child’s parents, advising them to Google the condition to find out more. For people with neurological conditions and their families, there is a vital need for better information and guidance about their condition and how to access the services they need. For older people, this can mean an understanding of how their condition might interact with other co-morbidities associated with ageing, which will help them stay healthy for longer. Meanwhile, when children are diagnosed with a neurological condition, parents often want to understand how their condition might affect their development and their school life.

However, as one attendee put it, ‘there is also a danger of too much negative information.’ The NHS will often provide a recently diagnosed patient with a long list of potential things the individual may (or may not) experience. Attendees discussed the destructive impact of announcing to a parent-to-be during a pre-natal appointment that their child has a condition such as Downs syndrome, by using the words, ‘I am sorry to tell you that…’ Using deficit-based language can create a debilitating sense of fear for the newly diagnosed and their families, which does not accurately reflect the experience of many with neurological conditions. Emotional support at the point of diagnosis can support people to cope with the information provided to them at this uncertain time.

The voluntary sector has a strong case to make to the NHS that its person-centred approaches make a difference to those with neurological conditions. One attendee described how charities can help to create ‘a flexible system allowing people to engage at their own pace.’ But some roundtable attendees had encountered ‘suspicious attitudes’ within the NHS towards the voluntary sector. Charities are sometimes viewed as inefficient and unprofessional, rather than being a partner to ‘share the burden’ of service provision.

Collaboration between charities to provide services across conditions is one way for the sector to more effectively meet people’s needs. For instance, this could entail collaborating with expert financial or emotional support services to provide services that cut across multiple conditions, rather than duplicating effort in many condition-specific charities. Not all charities present were entirely convinced of the benefit to working with services that are specific to a need, such as welfare advice. One commented that they had previously attempted to work with Citizens Advice services but found that it was more effective and cost efficient for them to train their own, in-house specialist adviser. Though there are significant challenges involved, partnering to provide services across different conditions has great potential to provide more and better support to people with neurological conditions.

It is clear to us at NPC that the role of an effective funder goes far beyond financial support. One attendee commented that the roundtable has ‘brought the paper alive’ and is a starting point for many meaningful conversations. Convening these sector discussions is a huge added value to charities who support those with neurological conditions and their carers, and shape the system that operates around them.

Grace Wyld, NPC—Grace works in the Research & consulting team at NPC, helping charities and funders improve, measure and communicate their impact.

3 Comments

Alan Rodger
on 15th December 2016 at 3:20 pm

As I read this I am taken back to many discussions, workshops, training courses, Delphi-style stakeholder meetings in the 1990s and since about communication between clinicians and patients and their families where the diagnosis is cancer: substitute “neurological” for “cancer” and the same reactions and concerns are expressed. Dèjá vu – and it suggests to me that the neurological world can learn from what we did in oncology in trying to improve communication, a responsibility and a desire that is yet to be achieved in cancer services but in which some steady progress has been made.

This was a very interesting event and unique in bringing Third Sector organisations and funders together in an open discussion forum. R S Macdonald are to be congratulated for enabling this to happen and I welcome future occasions to share knowledge across the sector. This can only lead to improved outcomes for those who are most important – our service users and beneficiaries.

From that time on I have applied a positive (‘half full bottle of whisky’) consultation approach for every case I have seen as a clinician.

I have frequently seen negative consultation approaches lead to desperation and depression, along with the adverse effects this has upon relationships. Moreover, a destiny of failure is not only prescribed, but can become the outcome.

Unfortunately, the ambience in which training in consultation is given to medical students and junior doctors is epitomised by the title commonly given to the training session “How to break bad news”, when “Explaining severe conditions and how to manage them well” would be a much better title.

By contrast, a positive consultation approach in which people / parents of children with long term conditions are not only well taught about the condition and how to not only deal with it, but to thrive in spite of it, reaps dividends.

Idea:

A very effective long term strategy to diminish the likelihood that doctors will adopt negative consultation approaches is to teach medical students using profoundly memorable drama, that impacts upon their own lives.

If a 10 – 15 minute film script for three actors enacted by a young ‘Doctor’ and two young ‘Parents’, were to be commissioned from a skilled screen writer and performed say in collaboration with the BBC, this could be material for every medical school in the country, as well as being permanently available on YouTube for all to see.

The power of intense drama in which the audience is drawn deeply into the consequences is not to be underestimated.

If it were deemed possible, a more ambitious approach with a film script akin to the movie ‘Sliding Doors’, in which a small single event is show to completely alter someone’s destiny, can easily be envisaged.

REFERENCE:

Br Med J (Clin Res Ed). 1987 May 9;294(6581):1200-2.
General practice consultations: is there any point in being positive?
Thomas KB.
Abstract
A group of 200 patients who presented in general practice with symptoms but no abnormal physical signs and in whom no definite diagnosis was made were randomly selected for one of four consultations: a consultation conducted in a “positive manner,” with and without treatment, and a consultation conducted in a “non-positive manner,” called a negative consultation, with and without treatment. Two weeks after consultation there was a significant difference in patient satisfaction between the positive and negative groups but not between the treated and untreated groups. Similarly, 64% of those receiving a positive consultation got better, compared with 39% of those who received a negative consultation (p = 0.001) and 53% of those treated got better compared with 50% of those not treated (p = 0.5).